Will Findley had a brain hemorrhage when he was 3 months old. Here’s how Medicaid helped him survive.

ANCHORAGE, Alaska — When Matt Findley’s son Will was 3 months old and wouldn’t stop crying it didn’t immediately occur to his family that the cause wasn’t hunger or a soiled diaper but something much more serious.

“He’s crying, which is what 3-month-olds do,” he said. “Finally we realized something was wrong.”

A CT scan showed a spontaneous brain bleed — one of the most serious complications of Will’s hemophilia, a condition in which the blood fails to clot normally. Doctors rushed him into surgery, where they removed over a quarter of his brain.

The initial prognosis was bleak: it was possible he would be unable to walk and talk. Will exceeded those expectations, Findley said, and is now 11 years old and succeeding in school. But for much of his early childhood, he was “his own medical industry,” according to Findley, needing numerous therapies a week.

Findley and his wife were far from indigent; they were lawyers who had health insurance through their jobs. But the costs of Will’s follow up care and therapies greatly exceeded what these private insurance plans covered and Will qualified for Medicaid based on his disabling conditions.

And they benefitted from Medicaid in another, less obvious way, Findley says. The treatments Will needed were only available because of the existence of government programs that pay the bills for most patients.

“One thing folks don’t understand about how Medicaid disability works is that most of those therapists, most of those services that are in place for disabled children are in place because of Medicaid,” Findley said. “You take away Medicaid funding and they’re gone. It’s a bit of a broad generalization but it’s not like you can just go purchase those services on the market.”

Slashing Medicaid, as the health care proposals in the House and Senate would do, could endanger the existence of these key disability services. But the bleeding disorder community, which Matt works with as president of the Alaska Hemophilia Association, would stand to lose in other ways if key elements of the Affordable Care Act were rolled back.

Before the ACA, patients with bleeding disorders were vulnerable to lifetime caps on how many benefits they could receive. The prognosis for those conditions is much improved from what it once was, with life expectancy within normal range with proper treatment. But medications don’t come cheap — the medication used to bolster Will’s clotting protein costs $2,000 a day alone.

To ensure that they had coverage to pay for treatment, members of Findley’s family would frequently change jobs in order to ensure they had coverage, only to be forced to move on once the lifetime cap was reached.

“We were lucky — my wife at the time was a lawyer for the state and so we had a separate plan to fall back on,” Findley said. “Many people don’t have that — you hit your lifetime cap, you change jobs, you lose your career. The whole experience is pretty scary.”

And in the days before the ACA, it would have entailed a huge financial risk for someone like Findley to start his own practice or strike out on his own in business, because no insurance company would cover a child with a pre-existing condition projected to cost three-quarters of a million dollars a year. Parents without insurance through their jobs could be forced into remaining in Medicaid disability, unable to work, lest they earn more than the maximum to qualify for the program. Before the ACA, Findley said, these patients were truly stuck.

“There are many in our community who were not able to get insurance until the Affordable Care Act, they were trapped in Medicaid disability, where they couldn’t go out and get a job and have assets … and they couldn’t buy insurance on the private market,” Findley said.

“The Affordable Care Act changed all that. We had several community members who went out, were able to get jobs and it was liberating for them to have insurance,” he added.

Advocates are concerned that both the House and Senate versions of ACA repeal would allow for the return of lifetime caps and could shut out those with pre-existing conditions.

Under those proposals, states could obtain waivers for many aspects of the ACA, including the essential benefits package, which is a set of base benefits states are required under the law to offer.

While the Senate bill explicitly bars insurance companies from denying coverage to those with prior conditions, many, including Findley, say letting states opt out of the essential benefits package would dramatically weaken protections.

He is quick to note that the ACA is not perfect. “The ACA had successes, it had failures,” Findley said. “It was certainly a step forward but it was not without its flaws. Our concern … is both of these versions don’t move us forward, they move us back.”

But in meeting with lawmakers, including both of Alaska’s senators, Republicans Dan Sullivan and Lisa Murkowski, he said he tries to bring the perspective of high-end users who interact with the current system daily.

“Pay close attention to the legislation you’re passing and what it actually does,” he said. “Don’t just think ‘oh it’s fine.’ Do the work and if necessary take the time but please make it better.”